Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
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@Taita that grandaughter of yours is so adorable. Those picture sure did bring a smile to my face. So sad we get none. We used to get over 150 every year when we lived in Riverdale in Toronto. Every costume conceivable and th wee ones were the most fun. Our neighborhood was known for the decor. My husband spent hours each each adding to the graveyard he built and others had wonderful themes. But our area was full of performers and set designers. Now nothing since its dark, we're on the hwy, and neighbors are mostly our age with our houses being far apart. So I celebrate Halloween vicariously through pictures my friend send of their grandkids. It will do.1
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Thank you @Fearless_Moderator and @Bojenka. I appreciate the advice.
@Eileen I will keep my fingers crossed for you.
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Til next week ladies....stay well!0
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Same here @Fearless_Moderator. No kids we live up in the orchards. My kids send me pics of my granddaughter or if they dress up. My kids asked me if i wanted to go to the walk through halowween scare maze. But it was a 45 min walk. I am not able to walk that distance anymore unfortunately. Im lucky if a 10 min walk around the house without being tired.0
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Ladies, we're on to 2PM and glad I could make today plus a thank you for joining in today.
Taita I do look for your recovery soon. Take good care and look at as just another bump in the road.
Strongwoman you also take care. I have always found i really need to take special care of my colon to keep things moving as they say. If you haven't already check out some of the recommended OTC drugs. For me 2 Senekot every night except during treatment. Then I take 3 the night before, 4 the night of, back to 3 on Day 2 and rhen back to 2 after that. Works for me.
Eileen you sound good, and always an optimist and cheerleader. Glad to have you with us.
Bojenka it's been a while and so happy to hear from you. You must share some of your pictures or just memories from France.
Hope I haven't missed any one. We\ll be back again next Thursday so hope you can join in again. In the meantime have a week of rest, and health.LEST WE FORGET
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@Eileen Thank you, I look forward to seeing that when it becomes available.0
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BRRRRR.....IT'S A COLD DAY THIS THURSDAY NOVEMBER 17TH HERE IN SE ONTARIO. AND OUR FIRST DAY OF SNOW YESTERDAY.
Nothing earth shakingly new to report to you. For those who, like me, have had several recurrences and forms of treatment how are your cognitive skills? I am finding my brain just won't kick in with names or words like it used to. And don't get me going on forgetful. Tuesday I spent an hour on a pot of spaghetti and left it to simmer for 4 hours. Then moved it off the burner so it could cool sufficiently to allow me to store it. Totally forgot about it and left it on the stove top all night! Distraction for me also means whatever else was on my mind totally disappears. Anyone facing similar changes in capability?Well enough of my complaining. It's close to 1PM so whoever is out there, say hello and let us know what's on your mind today and WELCOME .
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Happy Thursday I'm using the mic feature because I am shaking so bad from the dexamethasone I'm all thumbs. Got lots done today alone. Sent off request for free samples from depends poise and Teva. Will be good to have those on hand at some point. Talk with radiation oncologist this morning and I will move forward with a short treatment sometime over the next two weeks. This will be to hopefully reduce or stop the rectal bleeding and may help with the pain. Also reviewed my pain management and will be increased to two long dosages twice a dayAdditional if needed during the day. Hate wearing the ostomy parastomal hernia belt. It's worse than spanks Spanx1
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What else… Got my Covid and flu shot this week. Picked up my knitting needles again and if I can blow off a couple of toques I'm going to move onto a long length cardigan coat thing for my daughter. I've already solicited a great friend to complete it if I am not able to. But I'm going to finish it that's my goal0
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@Fearless_Moderator
Good Afternoon! Glad I am not the only one....names or words escape me all the time.....they eventually come back.
As for me, it is cold here and I made my Grandma's White Christmas Cake this morning so the house is full of good smells.
As far as updates, I haven't posted yet but my CT scan yesterday has shown no new growth and some shrinkage of existing tumours. What I am confused about is why then can I have a fecal impaction last week and partial obstruction of my bowel this week? The medical side of me can't leave it alone. The other side of me knows it is good news and I should be happy. I think I am in a state of disbelief because of how I have been feeling. I started Trametinib this morning and so far no major side effects. Has to be kept in the fridge and is a chemo drug so have to wash hands before/after handling it.
The snow I think I don't mind right now as I don't have to go out in it if I don't feel like it.
So that is news on my front.
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You are truly Tough As Teal gal What you go through and simultaneously preparing for possible future needs amazes me. You are inspiring to all of us.
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@ToughAsTeal
That is truly amazing! Look at you go! You sound a little brighter this week. Are you feeling that also? How do you feel about treatment choices going forward? I bet that belt would be difficult and annoying, I feel for you,0 -
@strongwoman grandma's white Christmas cake sounds like absolute epitome of comfort food and memories. I think I'd like to throw on some Bing Crosby White Christmas or Elvis. does the chemo drug have to be stored in fridge away from other foods.?Can it be stored next to a bottle of vodka?0
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We got our 5th Covid shot last week, the Pfizer Bivalent. There's been a shortage of the "seniors" version of rhe flu shot so waiting for a supply to come in and book our flu shots then. Off radiation. Monday was my last dose. Still can't move my left legs without pain so I guess it didn't work, Oh well, it was worth a try and the procedure not really invasive. Start new regimen of Gemcitabine only next Wednesday.
@ToughAsTeal I'm so sorry you're not faring well. Stay focused on that sweater for your daughter. I just know you have in you to finish.
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@Strongwoman. I have some really bad moments and then I get angry at myself for wasting my time with them. Sometimes it takes me longer but the core of me is to get on with it. Have a problem find a solution. And move forward.1
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Happy Thursday everyone! @ToughAsTeal you are an inspiration!! @Strongwoman I hear you. My disease is stable but my low WBC's seem to cause havoc and these viruses going around are serious stuff. It is all side effects of the side effects that seem to cause the most problems!
Good news is I feel better every day and am pretty much back to my normal self. I turn 65 tomorrow and my family was throwing me a "surprise" birthday party Sunday. We decided to cancel it a couple of days ago. My youngest daughter is the organizer and she is in Muscat Oman on vacation with her husband and from there she notified the 40 people or so who were coming and cancelled the caterer, the rentals, etc, etc. I marvel at her every day! My husband was really disappointed because it truly was a celebration but we all agreed with these viruses in ON and the fact I have already had round one and was hospitalized we shouldn't take a chance of bringing so many people together. I am of two minds. Relieved for sure but was so looking forward to it. We have decided we will have a 65.5 birthday in the spring!
I have to sign off. I am on a virtual conference panel talking about Hydrogen. Fund stuff!!! Have a great weekend everyone!!
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@ToughAsTeal
It didn't say anything about away from food. Nor Vodka!
I really don't drink anymore. Once in a while I have a glass of wine or something but it is pretty rare. With my bowels acting up unannounced I try not to add anything to the mix.
Bing Crosby or Elvis Christmas sounds wonderful.
I have some knitting on the go but need to get back to it as well.
Going with my elderly Aunt tomorrow to check out "Fair November" at the University of Guelph. I can't see it being overly busy first thing in the morning tomorrow but we will see. Trying to stay close to home in case I feel crappy until I get used to this drug.0 -
@Fearless_Moderator and @ToughAsTeal
I have not had any more shots since my 3rd dose. I guess I should ask about that next visit (next week). I just don't really go anywhere anymore and really limit who comes to see me. I guess any one of them could bring it home too.....just don't know what to do.0 -
Hello everyone,
I was wondering if anyone has experienced different ca 125 results when getting results from 2 different labs? Lifelabs posts a comment that changes in serial levels may be misleading unless all ca125 tests are performed at the same lab. I can't imagine it would be more than a point or two either way, but not quite sure what this means.0 -
@Taita it's not often I say Welcome and Goodbye in the same post LOL. Seriously though very thoughtful of you to find spot to dial in to us while on the conference call. Sure do hear you on the flu and Covid. It was wise to cancel your party but love the idea of replacing it with a 65.5 celebration in the spring. A great example of @ToughAsTeal 's philosophy of "find a solution and move on".1
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@hope2022
I am stumped on that one. One would think, blood is drawn, tested and results are posted end of story but who knows?!?
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@taita happy birthday! Walter Ostenek does a great happy birthday polka we dance in the kitchen! Wish i could send it to you. It is on i tunes, if you feel like a 1-2-3, 1-2-3.@Strongwoman i have missed fair november so much! If there, local lady makes pure wool dryer balls. Great gift,great self-gift! Sounds like Jumanji when the dryer is going! And no fabric sheets ever needed!0
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@Strongwoman wow,, what a great CT. What I'd give for "no new growth" and "some shrinkage. You should celebrate and put whatever misgivings in to a drawer and close it. Sure hope the Trametnib delivers to your expectations and glad no side effects to contend with.0
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@hope2022 is there a chance they use different analyzers? Juravinski used to call it Ortho125? If i remember, then changed it (how it was labled on my view my chart)0
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Ok i must be hooped up on the hydromorphone because i want to call the Trametnib Tammy1
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@Fearless_Moderator Yes, I know I should but I am not there yet. It is difficult and I will work through it. Harder I think given what last week and this week have been. I take it one day at a time and don't plan to far ahead.
No side effects yet, today is Day 1 so I am sure there will be some but as long as they aren't severe, I will be happy.
@ToughAsTeal Yes, I was just speaking with my Mom and it has been many, many years since I was there last. I will look for that as I think that would be a good thing for both myself and as a gift.
@Taita
I, too had great expectations for my birthday last year (50) and had take out at home with the hubby and my boys. We entered another lockdown during that time so it wasn't what I wanted especially given the year I just had but it worked. Couldn't afford to get sick or get someone else sick so I hear you on "it's the right thing to do". You will celebrate it and enjoy ever bit of it!1 -
@ToughAsTeal you would bring up Walter. Now I can't get polka songs out of my head. Did you know that when John Candy was in the second Home Alone movie as the band leader who offered her transportation home in his van that that was John's homage to Walter? All the muscians and actors that came out of the Niagara/Hamilton sector adored Walter, my husband included.1
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@ToughAsTeal Which Hydropmorph did they give you? Hydromorph Contin (3mg twice a day) it is long lasting and slow release and I have that as well as what they call "break through Hydropmorph 1mg) for when I run into trouble. Like I did this week. But....it only "rented" there for a little bit if you know what I mean. I am able to function quite well on the twice daily regime and can take Tylenol if needed as well with it as they say they compliment each other and Tylenol is not constipating.
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@Fearless_Moderator So interesting! When my husband was younger all he wanted to do was play the guitar and get lessons. His parents solution.......accordian lessons! He did not like it nor did he participate well. I did ask mother-in-law why a few years back and she said it was because someone came to the door offering lessons. Too funny...I don't think I would have made that choice but it makes for a funny story especially if you knew my hubby.0
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@fearless grew up watching his polkaSee if this works!1
